Surgery IY"H tomorrow, Monday

In an hour I should be leaving for the hospital for pre-op testing. My surgeon called at 5:15pm and told me surgery was on for tomorrow, instead of November 24th, and I need to be there at 9:30pm tonight for admission and pre-op labs.

I have too many things to arrange and too much to do to be nervous. My husband is schedule to work and needs to get the time off and we have to arrange for babysitters for the week.

I may or may not be updating the rest of the week. Most likely I will squeeze in another update in the morning, from the hospital, but it depends on how early they take me back.

It is a tricky surgery for the surgeon since the mass is in a dangerous place and there is a lot of scar tissue there already, but the recovery IY"H should be much easier than last time. I don't expect to be in the hospital for more than three days, but only time will tell.

Please daven (pray) for an easy surgery, full excision of all of the cancerous cells and a speedy recovery for Chaya Liba bas (daughter of) Sorah.

Thank you

Dreams

I have been having very vivid dreams lately, both good and bad. They are stemming from my recent experiences with life and death and wake me up either shaking or wishing they were real.

I don't remember ever having such vivid dreams or remembering so many dreams in the past. I had a dream about my friend RivkA, who just passed, followed by a dream about trying to decide which organizations to donate money (which I don't even have to donate) to, followed by a dream about traveling and vacation and making memories.

It was a lot for one night!

Shabbos night we got our first real rain for since last March. I hope we get a lot more since we are well overdue!!

This afternoon we had guests over, one of whom commented on the fact that I live my life in my recliner... As much as I do spend a lot of time there, since it is the only comfortable place for me to sit (everywhere else gives me pins and needles running down my legs from pressure points) I do keep my house clean, and running well, which I leave my chair to do. I get it was a joke. I know she respects me and appreciates the orderliness of my home and my well behaved children, it was said while I was sitting in my dining room table at my dining room table with them, but it still stung a bit.

Not being able to do isn't a choice, and I do what I can. I don't have all that much help, considering how I feel. B"H I have someone who comes for an hour on Sunday and helps with dishes and occasionally has time left over to help the kids clean the attic playroom. I have a cleaning lady once a week for three hours to do the floors and the bathrooms. It is a huge help, and if I was healthy it would be a luxury. At this point it is not. It is not enough of one for me to stay in my chair, relax and not work myself to the point of feeling lousy and needing IV calcium on a regular basis.

I know I am being overly sensitive. I smiled and didn't react to the comment, but it still stings even though I probably shouldn't have let it. I didn't choose this. I don't want this. I liked being healthy and super mommy, making everything from scratch and taking care of everyone.

Maybe tonight I will dream about being super mommy again. Too bad dreaming won't make it reality in the morning.

What a sad day.

My friend RivkA bas Teirtzel, will be missed. Before I left for Kever Rochel this morning I checked in and heard that her pain was under better control. By the time I came home she had already passed.

Baruch Dayan Emes (blessed is the true Judge).

She fought a long and valiant fight with breast cancer. She is the mother of three school aged children and her whole family needs your prayers.

http://coffeeandchemo.blogspot.com/

I lost my father to colon cancer when I was 16. Even 19 years later the thought of what that family is going through if fresh and raw.

We have all lost out by not having RivkA in this world, but I find comfort knowing she is out of pain and in a better place. The real hardship now is for the family she left behind. They have to continue living and that is not going to be easy.

I am so happy!

Since I applied for disability in December 2009 I had heard nothing and could get through to no one until very recently. Two weeks ago I got a phone call from the consulate asking me to bring them medical records.

I went Monday and it was a disaster at the consulate. They called me and asked me to bring in documents, then they didn't take all of my medical documents. I didn't have the strength to argue with them that they needed them all nor to go back once I realized what a disaster it was that they didn't take them.

I finally found an international Social Security number (after months of tries) that seems to have someone who listens to the messages and returns calls. Occasionally a real person answers!! I have been leaving message on a different number with no return calls and no one ever answering for months now. They answered the phone today and returned my call from yesterday! Five minutes after I got off with one Social Security worker I got a phone call from an even more helpful Social Security person!

The person who called me back was able to transfer me to my claim rep who gave me his fax and phone numbers. He told me that it wasn't my job to gather records, the Consulate was supposed to have gathered them on their own and that even though I gave them my documents on Monday, they still hadn't been faxed to him.

I faxed him all of the records and within half an hour he called to tell me he got them. He also said that there was enough documentation without even translating any of the Hebrew documents and he is passing it onto the doctors. He thought he would have the approval back from the doctors in three days and he would be in touch. It seems unlikely, and I am not holding my breath, but I am cautiously optimistic that we will have an answer before my surgery.

My surgery is in four weeks and I have to pay almost $4k of it out of pocket up front, so it would be fantastic if I got approved before then. I can't believe I am even letting myself dream about that. I will most likely have to borrow it from family (thank God they are there for me) but at least I have hope that approval may be on the horizon.

Tomorrow I am IY"H going to Kever Rochel with my mother in law. I have a lot of people in need of healing to pray for and I may sneak in a prayer for my financial situation as well. It certainly can't hurt.

I did it all.

I took a nice long nap this morning, stayed home to greet the first of my daughters when they arrived home (one had an after school beading group this afternoon), and then took a bus to the Beit Natan Women's health expose. I felt the need to show my support and I wanted to see my friends. I also had a little bit of worry that it would be empty and they might need a warm body.

B"H it was not empty. It was packed. There were thousands of women there. For a bit I helped give out bags with coupons and a magazines to the ladies who had paid to come in, since my friend manning the table was swamped. It was wonderful to see so many of my ladies and to be able to help out a bit.

I purchased a couple things that I needed from the vendors, caught up with friends, entered the raffle and went to the laughter workshop. It was exhausting but good.

After I got home I got a phone call from one of my friends, who stayed until the end, that she thinks I won the raffle I had really wanted. It was a silver and wood challah board, challah knife and challah serving tray. I hope she heard right, it was really really noisy there and I didn't get a call from Beit Natan telling me I won... We shall see!! It would be so much fun to have won.

After an hour of sitting and trying to gather my strength I went with my mother in law to my neighbor's house. She was hosting a party for her birthday and the yertzeit (anniversary of death) of the Rebbe Rashab - the fifth Rebbe (grand rabbi) of Lubavitch.

I was a bit too tired to participate fully, but she served some really yummy soup and I was able to socialize a bit. It was a long long day.

Now I am sitting here, trying to gather energy to pack my son's food for tomorrow and prepare his clothing. My head hurts and my body aches, but B"H it was a great and very busy day. It is okay to be wiped out after a day like that!

Good news or no news?

Oddly enough, we got CT results, but it seems it was a waste of time, radiation and iodine flooding my system.

The tumor that we know about wasn't on the original read and only found when my surgeon sat with the radiologist who specializes in neck CTs and they searched for it. Even then they weren't sure they found it.

So if they can't find what we know is there, did we really learn that there isn't anything else there?

This experience has not made me feel better that I am clear except this one tumor.

I spent my morning at the US Consulate. The new building is such a huge huge improvement over the old one. There is a gorgeous court yard after security, lots of light, windows and it is clean. Service was still painfully slow. I was there just to drop off papers and it still took me several hours. On the plus side, I was sitting waiting for them to call my name again not feeling well and one of the security guards noticed and brought me two disposable cups full of cold water. There were at least 100 people there but he noticed that I wasn't okay.

I have to say that that was good powers of observation and he is likely a very good guard!

I am not sure I left them all of the papers I should have. I didn't give them the papers I gave them in December because they insisted that they got them. What I saw of my file clearly said that they didn't receive any medical records, just my labs, back in December.

If I had given them to them it would have been a ton for them to get translated and very overwhelming. I am not sure what was the right choice. It is done though. All I can do now (short of going back to the consulate which I would rather not do) is pray and wait.

Most of my wonderful kids were holy terrors tonight. One was overtired from a field trip to the Kosel, and the night was just upside down. It was time outs, tears, one hurting another (which rarely happens here B"H!), not listening to mommy, feet hurting too much to do what needs to be done, I don't want to, drama.

In the end they went to bed knowing they were in trouble, without kisses, cuddles or Mommy singing them to sleep. It doesn't feel good. I am really sad about it actually.

This is not the kind of day I want to be filling my life with. Neither children in trouble or disability applications at the consulate are my ideal. Tomorrow I am supposed to be seeing my Beit Natan people but I am so wiped. Staying home, resting, cuddling my kids and being able to smile just seem much more appealing to me right now.

Rise and shine!

My husband was working the 7:30am shift again today, which means I was up early and in charge of getting everyone out the door to school. As exhausted as I was, it is always nice. I love brushing hair, giving kisses and making sure they have their sandwiches. Giving them their morning mommy time makes the whole day so much brighter.

Even better, 8:10am everyone was gone and I got a nap.

I spoke with someone at the US consulate and have an appointment to bring in my medical records tomorrow. I am feeling a lot better about that situation. I probably should give them more, but what I have will God willing be just fine.

My mother in law visited today. I really appreciate that she made the time for us. She brought coloring books for the kids and enjoyed watching them color and do homework. We ate together and B"H it was a nice afternoon. She got her shortly before my son got home (he gets home a couple hours after the girls) and stayed until I had to leave for parent teacher conferences at my son's school.

My son's parent teacher conference was B"H very nice as well. I met his teachers, his aide, and had a long talk with his principal. He isn't 100% on the same level as the other kids in the class academically but with only seven boys in the class they are happily modifying this curriculum for him. The principal is confidant that they will have an appropriate class for my son next year as well, which is a huge load off my shoulders.

He is in a school where they love him and bring out the best in him. This year he is in a class with all boys and all of them ambulatory and speaking. It has been a unique challenge for the school, but as they say a healthy one! Healthy problems are problems we celebrate.

On top of my trip to the consulate, tomorrow morning I need to call my surgeon. IY"H I will be getting results on my CT scan at some point tomorrow. I am obviously a bit nervous about what they will say, but I know who is in charge of the world and it isn't me or my surgeon. What ever will be is for the best.

Living and loving

It wasn't a good day physically, but it was a good day none the less. My calcium was low and phosphorus high and everything I did was painful, tingly and uncomfortable.

I pushed through it and get some of my paperwork together for social security and I called my surgeon about the CT results. He said to call back and remind him to present the case to the radiology grand rounds on Tuesday morning. There will be no results until after grand rounds.

On top of that that I managed blood tests and doctor's appointment in the morning and even had a nice mommy made lunch waiting for the kids this afternoon. We had an afternoon of eating, snuggling and homework and then I happily handed the reins over to my husband so I could go get my IV calcium and head off for my mommy's night out.

It was a nice evening. We ate ice cream and caught each other up with what is going on with our lives, our special needs children, and the new school year. It was exactly what I needed. So many of us had good things happening and those who didn't got the support and caring that they needed.

It is a great little group.

Now I am back home, which is always good. I love my house, I love my nest, in all the world my nest is best.

Tomorrow I should be going to the consulate, but I think I am going to stay home and nap and push that off for Tuesday. Tomorrow evening I have back to school night for my son's school and I need to be rested for the traveling.

I am a bit down/overwhelmed

Shabbos was B"H great but I didn't get much sleep. I stayed up late talking with my husband and was up early entertaining my mother in law, until she left for my sister in law's for lunch. After lunch, when I was ready for a nap, an unexpected guest showed up.

Visiting with my mother in law was great. The company was nice as well. My children were wonderful, the food good and Shabbos great, but I am not ready for this week.

I have a friend who is in the hospital in liver failure from late stage breast cancer. She is hallucinating and wouldn't know that I was there, but I feel bad not going. I can't though. I sit at home praying for her, wishing I could do more.

I am waiting on my CT scan results and trying not to worry about them or look at the images. I just want to know what they found and whether the surgery is just going to be the known cancerous node and surrounding area or a bigger surgery. I have had nightmares about the surgeon deciding he needs to re-dissect the first side and do a complete dissection my the left side of my neck as well. I need to hear that there were no unexpected findings. I have a feeling I won't get that call until Tuesday at the earliest.

Sunday I am supposed to be getting together with friends, which I am looking forward to, but that night out is followed by parent teacher conferences Monday at my son's school, which should be fine but exhausting.

I have to get to the US Consulate with my disability paperwork one morning this week, and though I have some good strong letters in English I am not sure it is enough or if I should be getting more paperwork translated. I don't even know if they will accept my translations, though they obviously aren't doing their own. How much work do I put into this if they won't accept the translations anyway?

Wednesday Beit Natan is having a Women's Health Fair and Chinese auction. http://www.beitnatan.org/ My husband thinks I should go, and I haven't seen many of my Beit Natan friends since the winter day retreat, but it is an all day thing. I have no idea if and when any of them would be showing up and I certainly am not going for the whole thing. He got the day off for me to go, but I am just not sure.

I really should call and update my oncologist on the biopsy. I still haven't. I am debating waiting on the CT scan results to call or calling tomorrow.

I am sure once I get the disability paperwork done, organized, to the consulate and off my head I will feel a lot better. It is causing me more stress than the rest combined. As we know, stress makes me physically ill, numb and my muscles cramp, so it is a bad cycle.

On the other hand, the second hand sectional we purchased is wonderful. It isn't nearly as comfortable as the two seater couch we purchased almost fourteen years ago but it is comfortable and has room for everyone! AC slept on one end and there was still room for all three girls to sit and read without being on top of each other. There are technically five seats, though there is room for more people, plus my armchair means everyone in our family has a comfortable place to sit in the living room.

We are having a reprieve from the heat for a couple days. It was only in the 70s today and shouldn't hit 90 again before Wednesday!

My husband managed to get day shifts when I need to be out in the evenings, so I do not need to get babysitters!

I am working on focusing on the positive, and B"H there is lots of it.

No results

I did call my surgeon. He didn't have my CT results yet. He is hoping to have them in time to present on Tuesday.

Mean while I am stuck here with a cd of CT pictures that look to my like tons of nodes. I know I shouldn't have looked, but I thought they might be cool (and figured they might be indecipherable) like my MRI pictures.

Today we got a new to us second hand couch. :) It was delivered this evening while my husband was at work, but the delivery people couldn't make it fit in the house. LOL The couch we were replacing was supposed to go to my BIL, who doesn't need it or have a place for it which is complicating things as well.

Our old couch is a nice love seat that needs a home desperately. It is very comfortable and perfectly presentable. After almost fourteen years of marriage we thought it was time to have a couch that seated more than two people or we would have stuck with it ourselves.

My throat is sore. I finished my antibiotics this morning and after only "missing" one dose this afternoon my throat hurts. I don't think we cleared the strep, but I wonder if we can even do a new throat culture with me on prophylactic antibiotics?

My house is so close to being in order I can almost feel it. The problem is some days I can organize and clean and do and other days I can't. Both on the days that I can and the days I can't I B"H have small children doing, and their doing isn't helping my house.

I cleaned the kitchen. They messed the kitchen. I cleaned the bathroom they messed the bathroom. I cleaned their room with them, who can tell?

Unless I send them away there is no way I will have the house in the order I want it for my surgery. In the olden days I would have pulled an all nighter and cleaned the house the night before the surgery, top to bottom, and baked and cooked while I was at it. Last surgery I went in joking that it was a good thing that I had surgery, I needed some sleep!

This time I just have to relax and lower my expectations. The house is fine. It is comfortable. You can tell children live here. There is some clutter but it isn't dirty. No one will starve while I am gone. I will show my daughter how to use the bread machine. They will buy bread for those who don't like bread machine bread. There will be no rolls and bagels, but there haven't been for a long time and everyone is just fine!

We do need to get another bookshelf though. I just have to make up my mind which one.

I also have to finish with the social security papers. I had a friend who works for social security who was going to look at what I had and tell me if I need to get more letters in English or more of my Hebrew documents translated, but she isn't well now and is scheduled for brain surgery Monday. I am on my own with this now.

Tomorrow night my MIL is supposed to be coming and eating the Shabbos meal here. It will be nice to see her. The children are really looking forward to it.

Better than I thought! B"H

My calcium is low, but not too low. My gut is still unhappy, but less so than yesterday. I napped this morning and didn't have the strength to do too much today, but what I did get done I feel great about.

I made two big jars of pickles out of the cucumbers that my husband bought long enough ago that I had figured that they were rotten. B"H the cucumbers were fine, the fresh dill was still fresh and IY"H we will be eating pickles again soon!!

The cucumbers were sitting in a closed plastic bag in the fridge for at least a week, which would generally guarantee rotten cucumbers. Having them all look great is really miraculous. It was a lot of cucumbers and cucumbers right now are really expensive. They have gone from 4nis a kilo (just about 50 cents a pound) full price and one shekel a kilo on sale (~12 cents a pound) to 12nis a kilo (~1.50 a pound) on sale. Waisting food is always sad, but waisting expensive food is close to criminal.

I also cleaned out my hospital bag. There wasn't much in there, some socks, a slip, toothpaste, coffee packets... just stuff that didn't get unpacked after my last hospitalization. We found long ago, with my son and his hospitalizations, that if I completely unpacked, whether it was a day, a week or a month later, we would be right back inpatient. So to try to prevent that I kept the bag fully packed and in waiting. Slowly over the last year and a bit we have stopped with the packed bag but never full unpack either.

With surgery scheduled I think it is safe to unpack already. I have no illusions that I am staying home.

Of course, now that I am unpacked I started thinking about what to pack. I have plenty of time to think about that and make my lists before I need to put anything in the bag though.

I need to call my surgeon tomorrow and ask if he has results from the CT. I am not sure if I want them or not but it generally is best to be prepared.

Sick day.

It seems my Crohn's has flared from all of the recent stress. I am really not okay.

I managed to see my PCP and take care of my new, in English, letter for Social Security before I realized how sick I was. I also spent a couple minutes visiting with my husband's grandfather, who was in the country for the wedding that wasn't.

Besides that, today was pretty much a wash.

I think it will be an early to bed night for me, if my stomach will cooperate. Unless things turn around quickly I am afraid tomorrow I will be feeling even worse, from low calcium, even if my stomach is better. I am not going to absorb medication like this.

I just want to feel well, get things done, and not get sick from it!

I told

I have a hard time telling my mother bad news. Today I finally told her about the positive biopsy and my upcoming surgery. It wasn't a pleasant conversation and as much as I would like to feel relieved it is over, my mother is more upset than I was which negates any of the possible relief I could have felt.

Besides that B"H I had a pleasant and productive day. I had a nap in the morning but still managed to get the kitchen cleaned up and re-organized and went through the medicine cabinet. I threw away lots of expired medications and put everything else into order. Decluttering always feels good!

Right now I have challah rising. My husband sifted flour for me this morning. I am hoping to get him to sift some more flour tonight, once he gets home from work. I really want to fill the freezer for after surgery. I know I won't be up for baking for quite a while after and preparing on my good days is the only way I will be ready.

Right now I have six challahs and 10 challah rolls rising. If I manage this every week until my surgery I will have enough for at least a month prepared and waiting.

I think I am going to order a bookshelf for all of our overflow. There is no way I can have the house in order the way I want it when we are lacking book shelf space like this. I have beeb putting it off, thinking I would find a nice second hand one to buy, but at this point I will settle for a not so cheap put it together yourself one just to have things in order.

There are many things I can't do but what I can do I am determined to accomplish.

Thank you for the warning!

My CT was tonight. It was a colossal time sink, as are most trips to the hospital. 6:15pm I arrived for my 6:30pm appointment. I got a bit lost and ended up coming back downstairs to ask for directions. Waiting for the elevator to go back up someone called my name. It was my surgeon!

Talk about hashgacha pratis (divine intervention)! Not only was he able to point me in the right direction for my CT he also wrote me a letter (in English) for Social Security! Instead of translating I seem to be collecting a set of notes in English, which makes me feel better. I hope it makes Social Security happy. I am thinking of sending in the current doctors' letters in English plus the old records in Hebrew with just the key ones translated and all of them labeled as to what they are.

I waited from 6:30pm until 8pm for my CT. It seems they forgot me. It was very busy, with a lot of urgent cases coming in so I waited patiently until just before 8pm. Once I went to the secretary to ask what was going on and when I would be taken they got me in right away.

Same with the disk of pictures. They said it would take up to half an hour. Other people were being called up to get theirs, so I waited. After half an hour I went and asked and it was actually waiting right there for me.

I wonder how much time I could save by not being polite and patient?

Speaking of being patient, there was little communication tonight. I didn't get much in terms of instruction or what to expect so I am glad that someone who loves me had filled me in and warned me. IV CT contrast is an odd odd thing. Not only can it make you flush and a bit sick to your stomach it makes it feel like you peed yourself. Not that you actually do, but it really feels like it. The only reason I didn't freak out was the warning, which I think should have been given by the hospital staff as well!

Can you imagine trying to stay still and not move feeling like that, not knowing you didn't and that the sensation was normal?

So now you are warned too. :) If you ever have a CT with contrast and feel like you peed on yourself, you probably didn't.

Shabbos was really really quiet, even if my head wasn't

My oldest was with her cousin's bas mitzvah celebration. Even though she is quiet her presence at home was very much missed!

I had vivid dreams all night about paperwork, surgery dates and shopping without enough time.

Friday I got a phone call from the consulate. Social Security (US) wants paperwork from me, urgently. They claim they got my lab results but not hospital or office notes. I was totally confused because I gave them everything, until I realized that the things they claim they didn't get were all on Hebrew.

I asked before I gave them in in Hebrew and was told they would translate them themselves. I guess not! My thought is that I better get it done myself before I hand them over again. I also have to go through all of my papers and figure out which ones they want. Since they are in Hebrew that is a chore.

I am dreading dealing with the papers more than I am dreading my CT tomorrow or my surgery. It really really has to happen though. There is a lot hanging on these papers and it has been hanging a long time.

Thanks for the offer, but I am trying to save my sanity

Today was an awful day.

My grandmother, who is a great woman, a huge support of mine and an inspiration died last night.

The funeral was at 3pm in Boston, so I obviously was not there.

All I wanted to do besides cry, once I heard the news, was call her. We have had so many wonderful late night conversations and I want to have more.

I am sure she is taking great care of all of us from a better place now, but I am going to miss her so very very much.

At 3:45pm I got a phone call from my surgeon offering to put me in for surgery on Sunday. I was already an emotional wreck, so making such a choice was too much for me. There was no leisure to compose myself and answer rationally either. He needed to know before 4pm.

If I agreed to surgery on Sunday they would have had to get me in for the CT this evening and I would have had to do pre-op tomorrow. I would have had to come up with insurance approval for their part and money to pay for my part of the surgery by Sunday. The person who I could always rely on to lend me money in a pinch died this morning, so being financially unprepared would have required phone calls and energy.

I failed at getting babysitters every other time I tried to get one this week and I would have needed one for the CT tonight. DH was scheduled to work and it was too late to easily get him off of the work roster for next week so we would have needed even more babysitters.

My husband was at work and the surgeon needed my answer by 4pm. All I could think of was what I would have to juggle to be ready for surgery Sunday.

It was just too much. Too much to think about, too much to arrange and too much stress so I ended up saying no to Sunday.

The next available slot my surgeon could get was either November 24th or 25th.

After 4pm I spent quite a bit of time second guessing myself and my decision. Rationally, waiting may make sense, but a month and 10 days is a long time to have surgery pending and something that we know is malignant growing in my neck.

Trying to get life in order

When I am healthy and stressed I clean and declutter. Before my last surgery, and before my calcium issues, I cleaned the house from top to bottom and filled my freezer with fresh rolls and bagels.

But now I can't do too much or I make myself ill and in a dangerous spot.

I emotionally need order right now. I need to be ready. An organized house makes me feel more in control and more put together, no matter how I am physically. My head is more in order when my house is in order.

Today I had help folding and putting away laundry. I really appreciate it. I happily paid my helper for her time and just wish she could come more often. I did some decluttering in my room with my husband's help as well. The laundry room still looks great B"H and progress was made on the attic playroom last week. I just want it all done now and perfect.

The kitchen is clean, no dirty dishes, but it needs some organization. The dish drainers are full and there are boxes of cereal and a bit of clutter on the counter, etc. My husband helped with the dishes while I was sick, for which I am grateful, but he doesn't even see the clutter. Putting things away and making the kitchen feel like mine and look beautiful again is up to me.

If I had unlimited energy I wouldn't sit and think from now until surgery. I could find plenty to do to avoid thinking.

But G-d has other plans. I will work and feel accomplished in small spurts and think in larger chunks even though it goes against my nature. Too much time to think is hard when there are such big and scary things looming.

I am also having concentration issues. I missed my doctor's appointment this morning. I totally spaced out when it was time to leave and didn't remember about it again until an hour after my appointment. Later I missed my daughter's appointment as well. I let her know she was going to have to remind me and we were going to have to leave as soon as she got home, but she didn't and I didn't remember until much later in the afternoon.

Tomorrow we will have to try again! I need some prescriptions and help getting insurance authorizations for everything coming up and for my primary care doctor to know what is going on. I haven't seen her since before my biopsy.

Good news: My husband took the box of "too big boy's clothing" down and we found quite a bit of winter clothing in sizes three and four. I am so so relieved. We only have one medium size box containing all of too big clothing, we got as hand me downs and gifts, since he is the only boy, and I hadn't even hoped that so much of it was what we needed!

This is a huge relief. Not only does shopping take money but it also takes a lot of energy. For now it is back to summer weather, hot hot hot, but I don't need to even think about my son's winter clothing once the weather turns cold again!

I can continue to stay home and concentrate my energy on my children and getting my house completely in order.

B"H Feeling a lot better, but a little less at ease with the situation

My throat culture came back positive for group A strep, which was no surprise. B"H the antibiotics are working though, and though I still feel yucky my throat is much better and my fever is gone.

I was feeling enough better to go to the pharmacy and pick up my medications and bring paperwork to my doctor's secretary to start getting insurance authorizations for my visit yesterday, my CT and my surgery.

The CT is scheduled for Sunday. I thought I would have a bit more of a wait. My surgeon is afraid that the cancer he found on my esophagus and trachea when he did the surgery last year will show up, as well as the recent tumor. I certainly hope not. I am not sure I even want to go for a test that could show that. Ignorance is much much better than that kind of knowledge.

Knowing that the RAI didn't do much in my neck I really don't know what to expect. I had hoped it would take care of all of the stray cells and make miracles. Knowing it didn't is unsettling.

Last surgery was a right radical neck dissection. The current surgery authorization request is for a paratracheal neck dissection. It sounds better than radical, but I still hold that live people shouldn't be dissected at all.

It is also time to push the US Social Security office to look at my application. It has been 10 months since I applied and they haven't even requested records from my doctors!

I now have two qualifying diagnosis, of which I need one to qualify. I have the work time in the US as well. I worked full time in the US, legally, and payed my taxes for my work, until a year before I got sick. I only stopped because the office I was working in collapsed and my son was so sick that I couldn't consider looking for a new job.

The wait is getting frustrating.

If they would get their act together it would be easier to decide if we are paying for my surgery privately or hoping that my surgeon is the one there. He says he will try any which way, but unless the surgery is private there is no guarantee he will be the only one operating.

I don't think I want some random resident operating on my neck. I am pretty sure I will have nightmares if I think too long about that idea so I am going to work on arranging to pay the fees to make sure my surgeon is the one in there the whole entire time. It is my neck and life on the line and it is worth a lot to me.

I am sure it will all work out. B"H it always does. The trick will be getting to the end still smiling during the day and sleeping soundly at night.

Being sick, sitting around the hospital is a bad combo

I couldn't sleep last night because I was either too hot or too cold. My temp was 101.3 when I checked it at 5:45am, which explains a lot. My throat hurts too much to swallow my saliva. My tonsils are almost touching each other. I most certainly have strep.

I spent last winter on prophylactic antibiotics for strep. I hate strep.

This came on really fast! I never would have gone out last night if I had realized that it was anything more than a sore throat from being overtired.

This morning I went for blood work, but didn't have the order for a throat culture. My doctor was not working and there was a line to see the doctor who was. I had a ride to the hospital leaving at 8:30am (and the office only opened at 8am) so I didn't have time to do everything. B"H one of the wonderful nurses swabbed my throat and took the responsibility for getting the paperwork to send off my culture.

I hope she was successful!

I am feeling lousy and twitchy, but interestingly my calcium isn't all that low. The problem right now is that my phosphorus is really high, higher than I have ever seen it before. Phosphorus binds with calcium, so high blood phosphorus lowers the amount of available calcium, even if the amount of calcium is technically normal. That is why they never check my calcium without checking my phosphorus. I wonder if this is because I am sick. Usually when I get sick my calcium drops. This time it had to be different!

There isn't much we can do about this. IV calcium might get rid of the twitchyness, but it won't lower the phosphorus and it is dangerous to have the calcium and phosphorus both on the higher side, so it isn't an option.

I spent from 9:15am until 12:45pm at the hospital just waiting. The only ride I could get was at 8:30am, and my surgeon said to arrive between 11am-12pm so I knew I was in for a wait, but sick, feverish, and miserable, that was quite a long long wait.

I tried to get radiology to print my biopsy reports so I could read and digest them before I saw the surgeon. They pulled them up, read them and refused. I tried to get my surgeon's nurse to print them, same thing. Blah.

I already had an idea of what it said, so I wasn't surprised at their reaction, but I wanted it.

So, sof sof, I saw the doctor. I need surgery. He figures it will be a significantly easier surgery than my previous surgery with only a two night hospital stay as opposed to the week and a half last time. It may be a couple months before he can fit me into the operating schedule though.

I am not sure how I feel about that. On the one hand I am not in a hurry to have surgery, I know this has been there for over a year, so a couple months isn't a huge deal. On the other hand my surgeon says it is most likely growing around my laryngeal nerve and we already know it is right next to my carotid. It went from 4x6x9 to 6x8x12 in three months, so why give it more time to grow?

But I also don't want surgery now. I don't want surgery ever. I am finally feeling a bit better from my last surgery. I have pretty close to full range of motion in my shoulder and can use my right shoulder (the effected one) to hold my home phone on my ear, which is a big deal for me. :) I can't hold my cell phone on my ear with my shoulder, but that is probably for my best since cell phone calls are so expensive.

This surgery comes with the risk of nicking or irritating the recurrent laryngeal nerve, which would best case leave me hoarse, possibly unable to speak and the very remote possibility of needing a trach to breathe exists. Of course the carotid artery being right there, and possible effected isn't pretty either.

We discussed alcohol ablation, which is not an option since it isn't likely to get rid of the whole tumor and is very very likely to damage the recurrent laryngeal nerve and or my carotid. Same thing for cyberknife. He is most likely going to have to unwrap the tumor from around the nerve, so it has to be done by hand in an open surgery. I was worth discussing, but they are not options in my case.

Next step is a CT. Originally there was cancer up to and including my esophagus and trachea. My surgeon wants to make sure there are no surprises when he gets in there. One mass is all the ultrasound found, but he wants more imaging.

Then we most likely move onto surgery and radioactive iodine done in isolation. My surgeon holds out little hope for the radioactive iodine doing much though. He said that he expects me to be back every year or so to pick more masses out of my neck since the RAI doesn't do much for the neck and there was just so much in there when we started out and this one growing already. Anything between the muscle sheaths he can't get out surgically. Even one cell left behind can grow into more and we have already seen that it will.

Now I am home, taking antibiotics and waiting to feel better. My husband is working tonight but bedtime is soon. I may well go to sleep when the children do. It was a long long day.

So now...

as if my week wasn't exciting enough, I don't feel well. My throat is really sore and my calcium is definitely low.

The good thing is, I am seeing my ENT tomorrow. I spent last winter on prophylactic antibiotics for strep and I wonder if he will want me to do the same this winter. Being sick is really hard on my body. It throws it more out of wack than normal and lowers my calcium and raises my phosphorus quickly.

I was feeling relatively okay when I stayed home and didn't try to do much this morning, but my trip to see my friends was too much. I feel like a dirty dish rag now.

I have to be up and out early to get to the lab for blood work and then the hospital tomorrow. I hope I am able to sleep some tonight. I need to be coherent tomorrow.

Feeling this worn out makes it hard to smile on the inside. My outside may still look fine, but I am crumbling where no one can see.

I am so happy to start a new week.

Last week was not my best, but B"H we all survived.

B"H my son is getting over his pneumonia more easily than he generally does. My washing machine is fixed. My laundry room is thoroughly cleaned. My sukkah is down and the yard cleaned up, all of the dolls and toys are in, anticipating rain. I really hope it comes soon!

Shabbos we had a wonderful and easy going guest. With my children, that means they were more willing to help with the setting and clearing up since there was an audience. It was wonderful, relaxing and very pleasant.

This coming week I am getting together with friends Sunday night IY"H in Har Nof. It seems like a good start to me! Monday I am probably meeting with my surgeon (unless his surgery schedule doesn't allow) at the hospital to get paperwork started to schedule and get insurance approval for surgery. Tuesday my mother in law arrives in the country, though we won't be seeing her until later in the week, it will be nice to know she is near by.

I have to get winter clothing for my son. My girls are set, but B"H the size two clothing from last winter just won't fit this one. He is four, so this is a good thing. He has one pair of long pants, besides his suit pants, that fit. Since we have a working washing machine, we can wash them nightly if we need to for a bit, but I see some shopping in my future!

I am hoping our chessed girls (high school girls volunteer to help at different homes throughout the community) decide to come back this week. My husband is working evenings again all week and that means I am on for homework, baths, supper, bedtime, medications, and tube feedings every night on my own. As much as I enjoy spending time with my kids and love singing them to sleep, being the only parent home every night all week can leave me more than spent. Combine that with trips to the hospital and medical stress I really need some help.

Hopefully the help He sends is in human form and not caffeine and IV calcium.

Just what I ordered.

Today was a quiet day, which is exactly what I needed after an overwhelming week.

I left the house and did my blood tests this morning and went right back home. I would have preferred not to leave the house at all, but at least it was a quick and easy trip.

My son was B"H feeling well enough to sit in his stroller and go grocery shopping with my husband after I got home this morning. That gave me some peace and quiet, got my stir crazy child out of the house and got my pantry restocked. Wonderful all around! B"H

My husband called some places about repairing our washing machine. The first asked for the make, model and how long we have had it and declared it unfixable. He offered to sell us a new machine and deliver it today. That was odd and a bit frustrating. We, of course, refused to purchase a machine from him without trying to fix ours. It is the first time it has broken, no one looked at it and if I am buying a new washing machine I am researching and buying the best possible washing machine for my money!

The second person we called was an electrician we have used happily in the past. We didn't realize he fixed washing machines until my husband called based on an advertisement and realized it was the same person. We were so happy to be able to work with him again. He came in the afternoon and fixed my machine in 15 minutes. Not only was the machine fixable, but it was easily fixable.

It is a front loading washing machine. The drum is supported by two heavy duty springs. Where the springs are connected to the drum it is plastic and obviously breaks often because right next to the broken connector is a brand new, never used, second plastic connecting spot.

The spring got moved to the intact connect, the repair man put everything back together and I started a load of sick child laundry! I am so glad I wasn't even tempted to trust the first "repair" person we called!!

So now B"H I have a working washing machine again!!

Besides that there was no major news today, which considering how all of the rest of the news was this week is great news. We do IY"H have a teenage boy, who is here for yeshiva (post high school studies) staying with us for Shabbos. He is the brother of the wife of a good friend of ours and we are looking forward to meeting him.

I hope my son is well enough that we don't need to keep him on his oxygen saturation monitor all Shabbos since our guest will be in my son's room and my son in our room. The beeping is a bit much when it is in our room and not out in the hallway between our son's room and our room.

I am glad that today was quiet and calm. It is nice to have the washing machine working again, on its third load for the day as we speak. I know next week is going to be a hard one again, but IY"H Shabbos will give us our energy back and help us be ready to face any news we are handed, good or bad.

What a week!

Todays excitement started with someone helping my husband get the sukkah taken apart and brought up to the attic!!

From there we moved on to a dentist appointment, including fillings and sealants for one sensory defensive child. It wasn't horrible, but that may be because we gave her laughing gas. It was expensive, but changed a potentially traumatic experiences into one we all got through just fine B"H!

During the drilling I got a call from my surgeon with preliminary biopsy results. They were not good, but it is only preliminary, maybe the final results will be fine. M surgeon wanted me to come in tomorrow and start paperwork and schedule surgery. With the way this week has been and how I am feeling I asked to wait until next week when final results are in and he wasn't thrilled but he was okay with it.

I am so so numb and tingly. The more I do and the more I stress the worse it gets, and this week has been chock full of both. I need to get a babysitter so I can go for IV tomorrow night. I am crawling out of my skin from discomfort and that means my levels are critically low. It isn't just a matter of discomfort, calcium levels this low can cause heart issues as well.

This afternoon our washing machine died. The timing is incredibly funny. IY"H tomorrow we will fine a repairman to come and asses whether it is possible to fix it or not. It seems to be the week of the broken washing machine and washing machine repair and longevity conversations.

Yesterday I was telling someone how happy I am with my washing machine and how it is still running like new five years after I bought it. It only needing service once for a clogged drain pump in all that time... I also recommended my machine to the person I an raising funds to help buy a new machine. B"H she didn't listen to me!

This evening I brought my son (and the rest of my children since my husband was working) to the doctor because my son has a cough, is having major issues keeping his oxygen levels up, is needing quite a bit of supplemental O2, and having trouble with mucus plugs. I was quite sure he had pneumonia. He does.

After the doctor we stopped at the shoe store, which is in the same building as the doctor's office,

and miraculously found winter shoes for all four children! One of my kids is very picky and one has major sensory issues so shoe shopping is generally torture, involving multiple stores and some tears, but B"H it was fine. I didn't bargain hunt and find the cheapest ones, but I got the task done and made everyone happy. The temperature had finally dropped and soon, IY"H, we will have rain so sandals couldn't be their only properly fitting footwear.

I am determined to live and laugh and even smile through this week. My goal is to keep repeating to myself that HKBH is in charge and loves me, no matter what He throws at me. It may feel like rotten tomatoes but really it is for the best.

After the surgeon called I was tempted to turn off my phone ringer so I don't get any more calls, since no new is good news. B"H I have had some good calls, lots of support from friends and I am just not a happy hermit. I am looking forward to Shabbos, the quiet and the peace though. Shabbos is a good kind of quiet and detachment from the rest of the world. It is a healthy God sanctioned break, not a fear based one which really accomplishes little but breed more fear.

I am glad that there is only one more full day before Shabbos comes.

This is the quote which lent the words to the song which has been running through my head all day:

The whole entire world is a very narrow bridge.

But the main thing to recall, is to have no fear at all.

-- Rabbi Nachman of Breslav

What a day.

Impossible as it seemed at the time, yesterday only got worse after I posted my update.

I got a phone call from my sister it law telling me that my brother in law's wedding (in two weeks) was called off.

My brother in law is one of my favorite people and one of the most sensitive people I know. He comes to our rescue when no one else even notices we need help. He notices everyone's pain and worries and takes it onto his shoulders.

We try to protect him, since he is such a sensitive soul, but this time we can't. I fell apart when I got the news but B"H a good friend was able to come over last night and chat and hang out with me. When she was here I was able to calm my nerves enough to realize I was hungry and ate for the first time all day.

When I told my children today they fell apart as well. They love him so. My 12 year old recited psalm after psalm all the while soaking the pages with her tears and my nine year old sat in shock, speechless for the first time in her life.

I think we will be using the dresses that we had made for the wedding as an excuse to take some family pictures.

The 2765nis I paid for the private appointment for my biopsy and ultrasound yesterday, because my original appointment (which insurance would have paid for) was the same time and date as the wedding ceremony was schedule for, was obviously not mine to begin with.

My losses are nothing compared to the pain and suffering of my brother in law and the financial losses of others.

But there are also benefits. My mother in law and my husband's grandmother already have plane tickets. Though it is an expense, my mother in law need the vacation and my husband's grandmother hasn't met my youngest child and hasn't seen my other children in five and a half years! The last time she saw my third daughter, my daughter was only 11 months old. Now she is in first grade!

As much as the visit will be shrouded in a cloud of grief I am glad they are still coming.

I am, understandably really numb today. Stress drops my calcium levels and yesterday was incredibly sad and stressful and telling the kids today was intensely upsetting as well.

Tomorrow I am running around, first bringing my second daughter, who has intense sensory issues, for her first filling. Then I am bringing my son to the doctor since his breathing is a huge issue. He is coughing to the point of vomiting and needing more oxygen than he should if it was just a regular cold.

Considering how I am feeling today I really need a down day, but I certainly won't be getting it.

This was not my plan.

But is it ever?

I am a bit down.

I spent the day yesterday trying to take care of someone in the community. Her husband is disabled. He was born with spina biffida and had a kidney transplant a couple years ago. He is pretty much bed ridden now and because of the anti-rejection medication he keeps on getting infections. She is his full time care giver and money is really tight.

Three months ago their oven died. The wife just figured out what to cook and how to cook everything on her stove top.

Two weeks ago her washing machine died again, and this time it isn't worth even trying to repair it again. She has been washing laundry at her neighbors' homes, but there is no local laundry mat, she has no car and she isn't willing to embarrass her husband by bringing his soiled linen to a neighbors home to wash. Right now she estimates that she has at least 20 loads of wash waiting to be taken care of, and no machine.

I had been saving money for something for myself, so I deposited all I had into her account. It was 1000nis out of the 2,600nis a new machine costs. I spent the remainder of my day soliciting funds for her and came up with a bit more, though no where near enough. I am still working on it though and IY"H we will get there.

It was the right thing to do and I put all of my energy into it, even though I don't have much energy right now. I am still not feeling well. My son is sick. I am working on getting the house back in order before out of town guests arrive.

Today was my ultrasound.

I expected just another ultrasound, just like it has been every three months.

I went by myself.

I said psalms while I waited.

I prayed for my friends and relatives who need healing.

I did not worry.

First the nurse walked in and prepped the sterile equipment for the biopsy, just like every time before when we ended up just doing the ultasound and no biopsies. I smiled at myself, knowing she would need none of the equipment, wondering if I should tell her to save her effort and supplies, but kept quiet.

Then the doctor came in. She asked me how I was, if there was any change in my condition. I told her I was B"H doing fine and was sure that she would find all in order. She did her job, smashed my neck with her ultra sound wand and had me contort into funny positions so I couldn't see the screen at all, just like usual.

This time, she finished and told me that the node was bigger and she thought we should biopsy. I immediately said "no." Not, no you can't, just no, this isn't the right conversation, we aren't discussing this, this isn't how this works every time.

Before I could explain myself, she said that she thinks it needs to be done, but she will get another doctor to look. Quick as a flash she was back with the only other doctor I have been told to trust with my neck ultrasounds. He is actually her superior.

They looked together, spoke and bit and agreed that the biopsy needed to happen.

Being a smart lady, I couldn't really say no, not even there by myself emotionally unprepared. So she did it. B"H I survived. I feel like I was run over by a mac truck.

Now we wait for results and I start praying for my own health at least as intently as I pray for the health of my family and friends.

Back to school, back to our regular life, back to reality

My kids have been home for a week and a half. For a week and a half we have been without the morning rush, without uniforms to iron, without food to pack, without homework and without school bags to organize.

This evening, not only did I have Shabbos to clean up from, but all of the back to school prep to do and supervise as well.

I got three sinks of dishes washed and the kitchen to cleaned up. Food is packed and shirts are waiting to be ironed. A bit of laundry is done and I am tingly.

My IV Friday and a day of feeling better are becoming a distant memory. The weeks of stable calcium levels are obvious crashing. I am not stable. Pushing and doing what needs to be done in my house is pushing my body over.

I am numb. My muscles are cramping. I feel like I did Thursday night.

I have a busy week ahead, with my next neck ultrasound and one of my daughters scheduled for dental work. I need to feel better.

My brother in law is getting married IY"H in two weeks and we have family coming in for the wedding. I need my house in order. I need to be feeling well to get it in order. I need to be feeling well to entertain and appreciate everyone.

I can actually see the muscles on one of my fingers spasming right now. It may be interesting to see, but it isn't pleasant to have it be my bodying misbehaving.

No sleep last night but that was great for getting laundry done

I was so numb and my muscles were cramping to the point where I couldn't sleep more than a couple minutes at a time last night. Being up meant I was able to tackle the piles of laundry we had from the holiday and guests. We went from a laundry room of dirty laundry to a laundry room of clean laundry. There definitely was a silver lining in my sleepless cloud.

This morning I got my IV calcium, so hopefully Shabbos will be more restful. B"H I am feeling a lot better already, so I have hope.

Now I have to make challah and get the kids bathed. Shabbos comes in so early now that the clocks have changed.